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Promoting a more patient centred approach to lung cancer

Dr Michael Peake

GM, (12), 2013

The average age of diagnosis of lung cancer is a little over 70 years.3 Historically men have been more frequently affected by the disease but over the last 30 years there has been a steady decline in incidence in the male population. However, in women, lung cancer is increasing and has overtaken breast cancer as a cause of death in most parts of the UK3,4 and the male to female ratio is now 1.28:15.5The majority of lung cancer cases are among smokers (over 80%)6—although there is evidence that as many as one in eight of all lung cancer deaths are among people who have never smoked.7 The number of lung cancer deaths in never-smokers is higher than the number of people who die from many other cancers including cervical, kidney, liver, womb and bone cancer.4,8,9Lung cancer incidence and mortality rates are strongly associated with social deprivation. Lung cancer is two and half more common in deprived groups2 and the most deprived are overall 21% less likely to have received chemotherapy, radiotherapy or surgery than affluent groups.10In terms of geography, Scotland and the North of England have the highest number of lung cancer cases.2

Poor survivalOverall, lung cancer has a very poor prognosis which has improved only modestly over the last 40 years with less than one in 10 patients still alive five years after diagnosis.3 However a recent report from the National Cancer Intelligence Network has shown that in England the proportion of patients surviving to one year has been increasing steadily over the last 20 years, going from only 17% of both men and women in 1990 to 29% of men and 33% of women in 2010.11The main reason for these overall poor survival statistics is the fact that most patients have locally advanced or metastatic disease at the time of diagnosis. Patients caught early with stage 1 disease have a 71% chance of surviving to five years.3 Evidence suggests that this is likely to be due to a wide variety of factors. These include uncertainty among people as to the nature and significance of symptoms such as persistent cough resulting in them not seeking help until it is too late. Symptoms may be attributed to the effects of smoking and this combined with the guilt associated with smoking may add to the problem. There is also a certain nihilism, a lack of understanding that early diagnosis makes a major difference to the outcome. These are all issues are likely to also apply to some extent to GPs. Five-year survival rates in the UK are actually three percentage points lower than the European average and seven to ten points lower than the USA. Estimates suggests that more than 1,300 deaths from lung cancer could be avoided each year if UK survival rates were brought in line with the European average, and over 3,500 lives could be saved if we were to match the best in Europe.12 Recent research has also shown that around 40% of lung cancer patients in England first present as an emergency admission to hospital and that these patients have a significantly worse prognosis.13There is also evidence of wide variation in the management and outcomes of patients with lung cancer within the UK itself. The National Lung Cancer Audit has, for example, shown that less than six out of ten (58%) receive any form of active treatment and that these rates, and particularly the rates of surgery, vary greatly depending on where you are treated.14Without doubt, closing the gap in survival rates requires sustained and co-ordinated action by both policymakers and the NHS in order to help improve prevention, early diagnosis, access to the best possible treatments and information and support for all lung cancer patients.

The need for patient-centred careAs well as the challenges in improving survival rates, there is a real need to ensure that those people living with a diagnosis of lung cancer have a positive experience of their care. Lung cancer clinical nurse specialists have a central role to play here and since many of the patients are elderly the involvement of elderly medicine physicians is also of great importance. Many older patient are being denied treatment simply on the grounds of age alone and the regular use of the Comprehensive Geriatric Assessment for older patients with lung cancer would be a significant advance in the quality of care.15Providing care based on the needs of individual service users is one of the fundamental principles of the NHS.16 The provision of patient-centred care is now regarded as an integral part of efforts to improve the quality of services—currently underpinned by the NHS Outcomes Framework which sets out the indicators for measuring health outcomes at a national and local level.17Gathering feedback on the standard of care and support available to those with first-hand experience of using NHS services is crucial to informing improvements in the way that care is organised and delivered. The National Cancer Patient Experience Survey18 has already been established in England as a means of tracking how effective national and local lung cancer services are in delivering care, based on the views of patients themselves. With this in mind, the UK Lung Cancer Coalition also undertook its own nationwide survey of patient and carer experiences of lung cancer care and services. These findings have now been published within a report entitled: Putting Patients First: Understanding what matters to lung cancer patients and carers.19The survey asked respondents to rate the importance they attached to a series of statements associated with different aspects of care, and to separately specify whether the care they received delivered fully, partly or wholly against these statements. Despite many respondents reporting a positive (in some cases “excellent”) experience of care, the survey findings revealed some worrying discrepancies between what people expect from their local lung cancer services and the actual care and treatment they received. Prompt referral to a hospital (92%) and quick access to tests (88%) were rated as “very important” markers of a good experience of care by survey respondents. It is concerning therefore that only 64% stated that they, or the person they cared for, felt that they received a prompt referral. There was also a significant gap between the proportion of people prioritising quick access to tests as “very important” (88%) and the percentage reporting that this was definitely delivered (54%). A further 26% claimed that this was only true “to some extent”. It is imperative that people with suspected lung cancer are referred to hospital in a timely manner for the appropriate tests to investigate the type and stage of their disease, in line with national waiting time targets. The lung cancer quality standard makes clear that people reporting one or more symptoms suggesting lung cancer should be referred within one week of presentation for a chest X-ray, or directly to a chest physician who is a core member of the lung cancer multidisciplinary (MDT) team.20Separately, survey participants were asked to indicate whether they, or the person that they cared for, encountered any delays throughout their care. Of those who responded, 45% reported experiencing delays, with a number of specific examples of delays cited during the diagnostic phase of their care. The survey also uncovered the general lack of support and information received by patients and carers reported by survey respondents—as well as “mixed levels” of public and professional awareness about the disease. For example, almost two-fifths (38%) of respondents confirmed that they had either simply been notified that their cancer had spread or were explicitly not told about the extent to which the cancer had spread. Also, 40% of respondents described the level of understanding of lung cancer demonstrated by their GP as “variable”, “not enough” or “not at all”. Clinical guidance makes clear that the care of every person diagnosed with lung cancer should be managed and discussed by a multidisciplinary team (MDT) consisting of healthcare professionals with skills, knowledge and experience in the diagnosis, treatment and care of a person with lung cancer. Membership of an MDT should include a trained clinical nurse specialist (CNS) to provide support and information for patients and their families.21It is concerning, therefore, that our survey revealed that almost a quarter (22%) of respondents did not receive continuous support from a CNS or keyworker and there is evidence of significant variation in the number of full-time CNSs available in local areas.22These insights have highlighted the need to promote and embed a more patient-centred approach to lung cancer care. The report therefore makes a series of recommendations to help ensure that patient-centred care is routinely available to every person diagnosed with lung cancer throughout the country.

These recommendations are: • Clinical commissioning groups (CCGs), and member GP practices, should work in partnership with patient groups and local healthwatch bodies to host workshops with lung cancer patients and carers to design more patient-centred care and help to direct resources towards the interventions that matter most to patients.• Local hospital trusts providing lung cancer services should produce action plans setting out steps aimed at improving the experiences reported by patients. These measures could be included within the annual quality accounts which NHS trusts are required to publish.• Local commissioners should require evidence of compliance with all the statements set out in the lung cancer quality standard, including those central to patient-centred care, as part of the standard contract with providers.• NHS England should ensure that indicators in national frameworks reflect what is important to cancer patients and encourage continued improvements in care.• Providers should ensure that all lung cancer patients receive a personalised care plan, based on their individual needs and preferences, setting tailored treatment goals. These should be routinely reviewed and updated, and shared with the patient’s GP.• Using Patient Reported Outcome Measures (PROMs) to collect patient symptoms, concerns and quality-of-life data routinely from diagnosis onwards, will help focus on what really matters to patients.• CCGs should work with local authorities to deliver targeted advertising campaigns, building on the key messages from the Be Clear on Cancer programme.• Health and wellbeing boards should evaluate local lung cancer risk based on population demography and make recommendations to ensure high quality commissioning based on local priorities.• Academic Health Science Networks should support CCGs to develop the workforce and equip health professionals with the appropriate communications and shared decision-making skills, and consider involving current and recovering patients in designing training.19

SummaryIn lung cancer, there is a clear need to embed patient-centred care—an approach which ensures that all lung cancer patients are offered a co-ordinated package of advice, information, treatment and support, tailored to their ongoing needs and preferences.Despite major improvements in lung cancer services in the last 10 years, the feedback received by patients and carers in this recent survey reveals that we still have a long way to go. Only by continuing to work in partnership with policy-makers, the NHS nationally and locally, can lung cancer patients in the UK expect to receive the patient-centred care and treatment that will make the biggest difference for them and their families.Acknowledgements: The UK Lung Cancer Coalition (UKLCC) is the UK’s largest multi-interest group in lung cancer. It is a partnership of the leading lung cancer charities, clinicians, healthcare professionals and healthcare companies which are committed to, and have a shared interest in, improving lung cancer survival and the quality of life for people with lung cancer. www.uklcc.org.uk